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Kathy D

Hyperthyroidism High Hopes

26 posts in this topic

Hi Kathy,

 

Oh, how curious. I suppose you will just have to give it more time for the medication to kick in.

 

I sure do hope that this is all sorted out soon for you. As you've already discovered, thyroid problems can be very intrusive, and the sooner you can get the issue identified and properly treated, the better! :emoticons-yes:

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Unfortunately I am still miserable, even with the antithryroid drug.

 

My last round of blood tests were delayed because my doctor told me to wait 2 extra weeks so the antithyroid could get into my system. The last labs show the meds have kicked up my results into the normal range but I still have all the symptoms. I am frustrated I have not heard back from my doctor for his interpretation of my blood results from a week ago and what my future course of treatment is, I left another voicemail on the "nurses line" today. Of course I have been researching this and I am quite disappointed in him for not ordering an entire thyroid panel (especially BEFORE starting antithyroid to establish a baseline), and that I had to make several calls just to get a few basic thryroid tests added to my labs order.

 

I then became frustrated and tried to self refer to an endo 50 miles away that I had a recommendation for. This new endo is contacting my doctor for a referral and my history and will call me if I qualify. *if* my doctor gives the referral, and *if* the new endo will take me, then I need to call my insurance to see what they cover and if I can afford their care.

 

I now feel fortunate that I was so quickly diagnosed with scleroderma and didn't have to endure the nightmare a lot of you did, but guess its my turn now with the thyroid. I just can't afford for this to take months or years with my one and only miracle baby growing so quickly, she deserves better and so do I.

 

I have also developed frequent migraines, most of them nocturnal, when it's too late to use and abortive medicine. I guess I will find out what medicare D charges for maxalt-mlt.

 

I feel like pulling my hair out but its falling out faster than I can pull!!

 

Thanks for letting me complain. I will update again, hopefully with better news.


Diffuse Scleroderma Diagnosed March 2009

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Hi Kathy,

Sorry you are feeling miserable, it is a bit like that with this disease isn't it. I have had a round of procedures lately and said to my general practitioner this morning that I think it is all getting to me - I need a change.

 

You do too I agree, something nice and helpful would be good.

 

Sorry too about your migraines they are the PITS!. I have suffered with migraines for years and am so glad that most of the time they are under control. I take quite a few meds (as all of us do) and there are a few which I am quite sure suppress the headaches. First of all I take daily Cartia(aspirin) because I am antiphospholipid positive (or negative whichever is the one NOT to be) then I have Amlodipine for Raynauds and Renitec for Hypertension. I know these meds each and altogether prevent the migraines because if I ever stop taking or change one of them the headaches come back. Of course it is not much help if your blood pressure is already low and it is quite likely that your insurance might argue about providing some things.

 

I use Maxalt melts when I need to and find they do work and I can take one when I am already in bed and that's the best part. I am not the only one on the Forum who uses Amlodipine to suppress the headaches, Amanda persuaded her doctor. to let her try and they work for her too.

 

Chin up and try to do something fun with your wee one to take your mind off your troubles.

Lots of love and best wishes

Judyt

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Hi Kathy,

 

I'm really sorry to hear that you've been feeling so bad even though you've been taking the antithyroid drug. I can understand how frustrated and distressing it must be to feel that you're not really getting any further and that you really ought to be feeling better and you aren't! Infuriating though it must be, I think you will have to get back to your doctor again, even if you have to leave another message and insist that he lets you have his interpretation of your blood test results and gives you an idea of your future treatment.

 

I do hope that you soon feel much better and that you get some relief from your dreadful migraines, which can't be helping things!

 

Here's another :emoticons-group-hug: meanwhile,

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Ladies thank you for the great support! :emoticons-group-hug:

 

I have made ALOT of progress this morning!

 

Shelley, you are spot on with the word "invasive". That word along with the word fatigue just aren't ugly enough to really describe how difficult either of them can make daily life :emoticon-dont-know:

 

Judyt, I called the pharmacy and requested a refill on a scrip from 2010 he had given me for Nifedipine for Raynauds (tried both norvasc and procardia in past, realized norvasc was the same you and Amanda are on, and the Procardia seemed to help my Raynauds better though this time its for migraines). If he refills it, I am not taking it just yet, I don't want it to skew any bloodwork results if I get into the new clinic....... If I am not accepted its down the hatch they go and hoping to feel better! (no worries about my cocktail of prescriptions, they are all at one pharmacy that checks for interactions and my rheumatologist won't refill it if he is not comfortable anyway). Ps, He and my all my other doctors are in close contact and can look at my meds rx'd by eachother via the computer.

 

Joelf, your kind words always make me feel better :thank-you:

 

 

 

DRUM ROLL PLEASE :woohoo:

 

The new Endo Clinic just called, I'm in :terrific: .

Not only did my doctor make the referral, his office already sent my history to them!! Also unbelievably, the head Endo at the new office has already reviewed my records and wants me to see her office in less than one month!! I will not see her, the Head Endo, as she is booked out till Jan 2013, but instead one of her associates that she directly supervises at a satellite office thats only 25 miles away instead of 50!! They do accept my insurance, I just don't know the percent they will pay but at this point in time I am willing to pull out my credit card.

 

LOL I am exhausted from all the excitement and good news.

 

Thanks again Sclero.org family


Diffuse Scleroderma Diagnosed March 2009

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Kathy, I'm so pleased that things are looking up for you! :woohoo:

 

It does restore your confidence in your doctor when everything works as it should and hopefully, you'll now be able to get the treatment you need to improve your quality of life.

 

Excellent news!! :emoticons-line-dance:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Bummer, blood work from last week shows I am hyperthyroid again. They will run additional bloodwork and we will take it from there. My eyes have been a mess for a couple years or so now (blamed that on whatever autoimmune coming at, was wondering about sjogrens), and the last 6-9 months I have had a bigger appetite yet when I get weighed at doctors appointments I have lost about 10 lbs in the last 3 months. Woo Hoo any kind of bread has tasted fantastic!! I guess I need to buy a new battery for my scale to weigh myself at home LOL (roll eyes).

 

Bummer that my face is tightening/skin stretching but I have a double chin despite a low BMI. Bummer the waistlines in my pants are now tighter though my arms and legs are skinnier.

 

I noticed muscle loss in my arms and especially in my legs and rear end. Initially I thought it was from becoming more sedentary the last 5 years, now it all makes sense. I am hoping for the nuclear pill to kill at least part of it, but not all of it. Being hypothyroid and taking the replacement meds does not sound fun either. Fatigue has pretty much ruined my life and I fear adding more fatigue from going hypothyroid.

 

Its so hard to explain stuff to people, some think I am anorexic when they see my legs, and others assume I'm overweight if they see me from the neck up. Nope, neither, just as normal as I can be with scleroderma.

 

The one positive thing I can share is that my home is on its way to being in order now... I've been using the marital stress and bonus thyroid energy to get the house in order.


Diffuse Scleroderma Diagnosed March 2009

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Hi Kathy,

 

Sorry to hear that your thyroid problems have cropped up again.

 

Hopefully, the medication you're taking will help you to stabilise your thyroid to normal levels and I hope that your fears are unfounded and that you will not become hypothyroid and be swopping one problem for another.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Kathy,

 

I'm sorry you have Grave's disease on top of everything else. Generally speaking, if you have the radioactive iodine therapy, you will likely become hypothyroid sooner or later, but that is very treatable and better than suffering from Grave's. One caution is that this treatment could make eye involvement worse, so be sure to discuss the full range of treatment options with your doctor.  See Grave's Disease Treatment by Mayo Clinic.

 

It's delightful that you're also focusing on the silver lining of the doubly-whammy of Grave's plus divorce. A clean house is a terrific bonus, and as you know, one that is often hard to come by with chronic illness. You go, girl! :yes:

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Ladies, 

 

I still have Graves, apparently its' mild enough I will not be treated at this time.  Enough that I still get trembles and sweat too much and get twitches and have noticeable muscle loss (likely in conjunction with the new more sedentary lifestyle now) and sometimes my heart beats fast........Silver lining would be not having to take another med again (Methimazol), and marriage is back online at this time too:)


Diffuse Scleroderma Diagnosed March 2009

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Hi Kathy,

 

Well, it's interesting that you won't be treated for Grave's right now.  If you have any doubt at all about your treatment plan, be sure to seek a second opinion from a board certified endocrinologist, because it sounds like you are experiencing uncomfortable (and treatable) symptoms.

 

Also, please be sure to read up about "thyroid storm" which can occur with untreated and undertreated Graves disease. It's a very sudden, life threatening condition, so if you are aware of the symptoms you will know if/when to seek emergency care. It's also a good idea for people close to you to be aware of thyroid storm symptoms, in case you are feeling too grouchy or sleepy (from the storm) to react. It's not that it definitely would happen, just something to not take any chances with, either, especially since you are symptomatic but untreated at the moment.

 

I'm delighted that your marriage is "back online".  That's the first time I've heard that phrase, so I got a belly laugh from it. It's amazing how a lighthearted sense of humor can help restore relationships (taking things too seriously can be such a downer), so clearly you already have that arrow in the quiver!

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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